A Language Guide for Living With HS
Finding the Words
It can be hard to find the words to descibe what you're feeling physically, emotionally and socially. This guide aims to offer words and explanations to help you communicate to your family and friends.
Emotional Burnout
Mental and emotional exhaustion from constantly managing pain, appointments, treatment decisions, and explaining HS to others.
Stigma
Negative assumptions or judgment from others due to visible symptoms, odor, scarring, or misunderstanding about HS.
Medical Gaslighting
The experience of having symptoms dismissed, minimized, or misunderstood by healthcare providers.
Fatigue from Inflammation
Persistent exhaustion related to chronic inflammation, pain, disrupted sleep, or the mental toll of managing HS.
Pain Flare
A sudden increase in HS pain, inflammation, or drainage that feels worse than your usual baseline.
Social Withdrawal
Pulling back from social activities due to pain, drainage, fatigue, embarrassment, or fear of being judged.
Body Image Distress
Emotional discomfort or insecurity related to visible lesions, scarring, drainage, or changes in skin caused by HS.
Flare Anxiety
The constant worry or anticipation of the next HS flare — even during periods of calm — and the stress of not knowing when symptoms might worsen.
Chronic Illness Grief
Chronic illness grief is the ongoing sense of loss that can come with living with a long-term condition — grieving changes to your body, routines, relationships, abilities, or the future you once imagined.
Identity Loss
A feeling that HS has taken over parts of who you are — your confidence, plans, relationships, or sense of self.
Sometimes finding the right words is easier when you’re talking with people who truly understand.
Our HS support groups provide a safe space to share experiences, talk about the emotional and practical realities of living with HS, and connect with others who are walking a similar path.
Whether you’re newly diagnosed or have been living with HS for years, you’re welcome here.
This resource hub is made possible through sponsorship by UCB.
All content has been independently curated and developed by the HS & Me team.
Take the first step towards support, understanding, and connection with others who truly get your experience.